Learning Disabilities Mortality Review (LeDeR) Programme Pauline Heslop Programme Manager 1

Key Programme aims To drive improvement in the quality of health and social care service delivery for people with learning disabilities. To help reduce premature mortality and health inequalities in this population. 2

To support local areas to conduct reviews of deaths of people with learning disabilities Series of additional projects 3 Two key elements of the Programme

4 Context – Standardised Mortality rates (Former) Strategic Health Authority AreaAge standardised mortality rate (CI) for people with learning disabilities West Midlands3.59 ( ) South West3.26 (2.72 – 3.92) North West3.11 (2.60 – 3.73) North East3.09 (2.05 – 4.64) East of England2.97 (2.30 – 3.85) London2.89 (2.35 – 3.56) East Midlands2.30 (1.15 – 4.59) South East Coast*Data is not robust Yorkshire and the Humber*Data is not robust

5 Expected numbers of deaths of people with learning disabilities each year TotalAge 0-17Age 18-74All ages England782,2092,976 These are estimates of people with learning disabilities identified on GP registers. On average, in England, we estimate that about two thirds as many people with learning disabilities die each year than do children aged 0-17.

Local reviews of deaths Purpose: To help health and social care professionals and policy makers to Identify the potentially avoidable contributory factors related to deaths of people with learning disabilities. Identify variation and best practice in preventing premature mortality of people with learning disabilities. Develop action plans to make any necessary changes to health and social care service delivery for people with learning disabilities. 6

Process of local reviews of deaths 1 1.Death notification – centrally – collection of core data. Deaths reported to Local Area contact and allocated to local reviewer. 2.Local reviewer conducts initial review. Initial review involves completion of filter questions based on discussion with someone who knew the deceased person well, and review of a relevant set of notes. 3.If no further review necessary – completed form (and any action plan) returned to Local Area contact and LeDeR team. 4.If further review is indicated, multiagency review led by local reviewer. This involves collation of case documentation, holding a multiagency meeting at which potentially contributory factors leading to death are discussed, learning points, recommendations and action plan agreed. 5.Completed form (and any action plan) returned to Local Area contact and LeDeR team. 7

Process of local reviews of deaths 2 Deaths of children aged 4-17 Reviewed by Child Death Overview Process. Local reviewer liaises with team to offer learning disability expertise if appropriate and ensure collection of core data for LeDeR Programme. Deaths subject to Priority Themed Review A subset of anonymised reports of deaths to be reviewed externally. All will have been to multiagency review. In Year 1 this will be deaths of young people aged 18-24, or from Black and Minority Ethnic Communities. Deaths aged 0-4years and 75 years and older Not in the scope of the review programme. 8

Operational delivery of local reviews of deaths 1 Work with a Steering Group in each NHS England Local Area to take strategic level oversight of the reviews of deaths of people with learning disabilities in that area. This could be a newly established Steering Group, or the work could tie in with an existing body. We would expect the Steering Group to have multiagency representation, including: primary and secondary healthcare, social services, public health, voluntary sector, family representatives etc. The roll of the Steering Group would be to: To guide the implementation of the programme of local reviews of deaths. Liaise with Local Area Contacts for the programme Monitor action plans resulting from reviews and take appropriate action. 9

Operational delivery of local reviews of deaths 2 Work with Local Area Contacts for the Programme. The role of the Local Area Contact would be: To receive notifications of deaths. To help allocate cases to local reviewers. To monitor the progress and completion of reviews. To provide advice for local reviewers if relevant. To liaise with the Steering Group about any issues as appropriate. To receive completed review documents and action plans once a review has been finished. In conjunction with Steering Group to take appropriate action. 10

Operational delivery of local reviews of deaths 3 Train and support local reviewers in each NHS England Local Area. Reviewers would have a professional health or social care background. They will need: A thorough understanding of the needs of people with learning disabilities and their families. The ability to evaluate evidence, and understand specialist terminology. A questioning mind, able to probe further if necessary. Excellent communication skills at all levels, including with recently bereaved family members. Able to synthesise information, and to write reports based on robust evidence accurately and concisely. Enthusiastic and motivated to improve service provision for people with learning disabilities. Training for reviewers provided by the LeDeR team. 11

Governance and links to service improvement At local level: ?Safeguarding Adults Boards Not all deaths of people with learning disabilities are safeguarding issues – nor should they perceived to be…but…. The work would seem to fit most appropriately within a safeguarding framework….and is likely to provide useful information regarding safeguarding issues for people with learning disabilities At regional level: Quality Surveillance Groups – their aim is to identify risks to quality at as early a stage as possible, and ensure that action is taken to mitigate these risks and drive improvement in quality 12

Progress and plans Working with pilot site in NE and Cumbria Pilot is identifying key issues to be resolved Plan to roll out the programme of reviews once we have learnt from the pilot and made adjustments as necessary. 13

Advice re getting ready for the reviews Establish a multiagency steering group to guide the work. Establish a lead(s) for the work in your area a. Possibly at the equivalent level of the Steering Group b. For Local Area Contact roles Start identifying potential local reviewers Review data sharing agreements. You may need to formalize a specific data sharing agreement for the mortality review programme that will support the initial and multiagency reviews of deaths. 14

Contact details Dr Pauline Heslop LeDeR Programme Manager Norah Fry Research Centre, University of Bristol 8 Priory Road, Bristol BS8 1TN Tel: